I’ve had the pleasure of spending a week in Miami with my two brothers, Doug and Nick. Though they are in their 30’s now and I’m in my late 20’s, I noticed during our time together that not much has changed since childhood. (And since this photo.) Doug and Nick are only a year apart in age, but couldn’t be more different. In fact all four kids in my family are incredibly different, so much so that I’m often wondering how we all came from the same two people. But, my parents were some dynamic people, and they produced, well, more dynamic people. From a young age, I took solace in the relationships with my siblings. But hanging out this last week with my brothers made me remember the insanity that ensues when more than two Gelpi kids are in a room together. Here’s an idea and photographic proof of the different ways it can go. These photos are from childhood, but I assure you nothing has changed.

Either everybody’s laughing…

.

Or just my brothers are laughing and someone else is crying… (like my sister, seen here)

Typical.

Since I was kind of a loser/loner growing up, my brothers, more specifically Nick “adopted” me into his social circle; not really concerned that I was 5 years younger. I remember smoking my first cigar at age 12 and staying up until 6 AM one morning playing a rugged game of monopoly. They all got drunk so I won! You’d think ‘Hey! That’s wrong! You can’t be letting a 13-year-old puff a cigar or let her pierce her upper ear!’ But truthfully, it was never dangerous or irresponsible. My brother kept close watch over me always, like a good sibling does.

One Halloween, when I was 11, my friends went trick or treating without me and I was at home all down and out. When Nick came upstairs and heard the story he said “Put on your roller blades! Lets go!” (Rollerblading. I miss that shit.) Anyway, even though he had plans with some friends, he instead drove his loser little sister to the neighborhood which always gave the best candy. He accompanied me until my bag was full, and didn’t laugh so hard when I tripped UP the stairs from my stupid roller blades getting caught as my second grade teacher opened the door mid-fall. (Seriously, true story.) Anyway, it was nice of him to do that. I always remember that gesture.

Then there was high school. My senior year, I was taking my boyfriend to the Sweetheart dance. I was kind of dating a nihilist but I was 17 so I just thought he was emo and cool. My brothers said they would chauffeur me and my date to the dance, which I thought was a fun idea! So imagine my gratefulness for them when we took a right turn onto my dates street, and they rolled down all of the windows in the car and blared the theme music from Star Wars as loud as it could possibly go. They slowed the car to a crawl so the whole neighborhood knew we had arrived. I begged them to turn it down, but it was just so damn funny, that I couldn’t be embarrassed, I just had to laugh; which happens a lot with them. Or crying. Either one. The nihilist and I broke up that night coincidentally.

So none of those stories involve farts, I know. But trust me, there are plenty. Like this one. I thought we’d take it one at a time.

One night after dinner on Rich People Island, the boys and I got on our golf cart to drive home. Nick was the driver, me in the front, Doug on the back. When we drove by the dock Nick saw something in the water that got his attention, so he stopped and parked the golf cart, got out, and went to check it out. Of course, like clock work, Doug jumped in the driver’s seat of the golf cart and floored it away from Nick, laughing and hollering the whole way. This is probably the 4th or 5th time Doug stole the golf cart from Nick. Anyway, we finally turn around and pull up beside Nick, and he’s like “Doug let me drive!” And Doug’s like “Fine!” So just before Doug gets out of the driver seat, he FARTS, really loud, and kind of leaves his own little “bubble” for Nick to enter. This of course, makes Doug begin to laugh as we drive away. But it’s late and quiet on Rich People Island and there are people eating outside at a nearby restaurant so Nick is trying to hush Doug up. But Doug’s ridiculous laughter is making me laugh, and every time I laugh, it makes Doug laugh harder, and louder. Which makes Nick hush him more, which begins the whole cycle over again. It reached an obnoxious point where Nick stops the golf cart and refuses to leave until everyone quiets down and stops laughing…which, you know, failed. Luckily, I had a camera with me and it seemed like such a Gelpi brothers moment, I decided to roll tape. -Enjoy.

I can’t explain it, but my brothers gas has always been a hot topic in our family–sometimes humorous and sometimes NOT– and I just don’t see it going away anytime soon. I’ll never understand what makes a fart so funny. Anyway, I hope that made you laugh, because when I feel down, I watch that video and I can’t HELP but laugh! That’s the best part of laughter–totally contagious. I guess I should note here that most of the time, we all get along. See?

I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.

Not Too Shabby a View

I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.

Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!

The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)

On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone itso many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.

Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.

In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.

Interestingly enough, I have celebrated Father’s Day in my 27 years with 3 different father figures; My deceased dad Doug, my deceased step-dad Roger, and now my live and well step-dad Marc. (Don’t get any ideas, Marc.) Each of these figures have witnessed me at a different time in my life. I only had my dad until the age of 12, but I have never felt ‘cheated’ by losing him at a young age. I feel that the first 12 years of a child’s life are critical. My parents taught me from the day I was born what unconditional love looks like, and sometimes that included tough love, but I must say, even that was pretty rare. I learned what a happy marriage looks like, the dynamics of a large family, and that challenging times can be the ones that make you closest. We had our fair share of them. I truly look at my childhood with endearment because while maybe that chapter only lasted 12 years, they were filled with love, happiness and togetherness. I also had my two older brothers, Nick and Doug, both who took on a father role to me in my dads absence, and that has made an incredible difference in my life. To put it simply, I was made to feel that I mattered as a kid,and I think at a fundamental level that is what most children require in order to turn into secure adults. So Happy Fathers Day to Doug, Nick, and to my dad; I guess you knew that 12 years was all I needed and that I’d be left in good hands. You were right!

In chapter 2 comes the introduction of my first step-parent; Roger. Roger didn’t share so many traits with my dad except one vital one- he loved the crap out of my mom. Roger had a difficult life that had its fair share of pain and hurt. I could tell when he spoke about his childhood, it wasn’t the same as mine. I don’t think he was always shown unconditional love or made to feel that he mattered, so when he confronted that kind of love with my mom and her four loving yet obnoxious children, he didn’t always recognize it when it was there. As much as he took warming up to our family, I took warming up to him. It’s always an adjustment when new members join the gang. The whole dynamic shifts. My mom changed, the living situation changed, even our dog Bacchus changed. So it was challenging for me at age 16 to try to plant my feet in something solid. But after two years under his roof, it actually started to feel like home. Underneath his cautiously built walls was an incredibly loving, sensitive and generous person that after a while I was finally able to know and really enjoy. I used to call home during LSU football games and he’d be rooting them on and happy to talk to me. Somehow through all the muck, we were able to find each other, and it turned out to be a pretty great relationship. I would have never, ever, guessed that Roger’s role in our life would be a quick one too. My mom and him were only married 5 years when he died suddenly of a heart attack. I know I know, this sounds depressing. But both my mom and I feel that while we were a part of Roger’s life for such a small stint, it may have been the most vital. We were able to show him some of that unconditional love we’d both been a part of, and I think when he died even though it happened to be alone in his hotel room, it was the least alone period of his life. I feel assured of that. So Happy Father’s Day to you Roger; it wasn’t always easy and it didn’t last long, but I think we both showed each other a thing or two that ended up making a big difference.

Chapter 3; present day. Marc is my 3rd and hopefully my last father figure. When my mom and Marc married a few years ago, I figured we’d get to know each other over the years, but to be honest, since I was older and away from home, I always figured he’d be more my ‘mother’s husband’ than something like a step-dad. But wouldn’t you know it, at age 26, I end up too ill to work, unable to keep my apartment, and move myself and my dog back in with my parents–back to the house I thought I’d never live in again. It was not something I wanted or readily accepted and for that first month or two, I wasn’t exactly joyful to be around. Meanwhile right under my nose, I wasn’t considering that a sick girl and her dog moving back in with her parents wasn’t necessarily easy on them, either. But day after day, I was taken care of there. I wasn’t told that they were doing me a favor, I wasn’t reminded of the gift I was receiving and nothing was ever held over my head. Once again, I was shown how powerful a love like that can be. Marc didn’t owe me anything really, I was his wifes kid after all. But that is not at all how it played out. He turned out to be a lot like a real dad. I found myself saying “my parents house” and really feeling like I had two parents, not a mom and her husband. The point is, terms like “step-dad” and “blended family” have kind of become meaningless for me. It’s simple; blood doesn’t make a family, love does. And there’s plenty of that going around. So, Happy Fathers Day to YOU Marc! Thank you for playing your role so well to me, and being such a great grandpa to Monty. I’ll pay it back when you’re old and can’t feed yourself. ;)

If you’re like me, you’ve never heard of a place called Fisher Island. That was true until last January, when my mom found a CFIDS specialist with a clinic in Miami, and my brother happened to be engaged to someone who was from there. Without ever having met my mom or me, the soon-to-be in-laws invited us to stay with them when we came to the clinic for the first time. We would soon learn that they didn’t live in Miami exactly, they lived on Fisher Island; a private, man-made island only accessible by ferry or boat once your name has been added to a list and cleared by the guard. It’s like an exclusive night club but bigger and islandier and your money’s no good here. You buy everything through an account number. Your cash might as well be monopoly money.

It’s a real testament to my brother’s future in-laws that we were welcomed with such open arms. We could have been a bunch of crazies for all they knew. Hadn’t they met my brother? It was pretty immediately a Mi Casa Su Casa situation, accept it was more like My Island Your Island. It is exquisitely clean, beautiful and pristine here. There are pools galore though I never see anybody swimming in them. There is a private beach with a restaurant a few feet away. Theoretically you could effectively choose your own sushi menu right out of the ocean. That tuna there! I want that one! It’s something like Disney World meets the South of France. I’ve never seen or experienced anything like it. Whatever it is, of all the places to be sick, this one ranks in my top 3.

Before my first trip out here in 2011, I had spent most of the month of January in a horizontal position at my mom’s house. I was horribly depressed. I was watching everything familiar to me, all the things I defined myself by, slip slowly away with my health. It wasn’t easy watching or letting any of those things go. But I remember feeling the tiniest bit hopeful when my brother Nick called me the night before I was due to depart. “Dude are you ready for Miami?!” Sometimes even hearing the energy in someone elses voice could exhaust me in its own way. I groaned and said something about needing to pack but not having the energy to do the laundry. I remember he was so cheerful and said “All you need is a bathing suit. There’s a lot of sitting around and doing nothing on Fisher Island.” I closed my eyes and let those words hang in the air. “Sounds perfect.”

As promised, we were welcomed with enthusiasm as soon as the ferry docked. I remember entering their home and feeling like Little Orphan Annie entering Daddy Warbucks house–which is funny because Estee’s dad slightly resembles Daddy Warbucks. Every room was beautiful and had what I consider to be the most important detail in any room; large and bright windows–most with a view of the ocean. I suddenly felt really lucky to exist, and that glimmer of hope I had on the phone with Nick came back as I hugged the new members of our family and they insisted we eat dinner even though it was past 10. I remember my doctor’s appointment wasn’t until two days after we arrived, and thank God it wasn’t because most of the next day was spent in bed with a killer migraine and that ever so seductive hit-by-a-truck feeling. The only difference was, this time I woke up in a beautiful room with a breathtaking view. And to some extent, that did make a difference. It at least softened the blow of it all. I remember taking migraine medicine and going back to sleep. And when I did, something happened something that continues to happen. I fell asleep but could hear real life happening outside the door. I would try to yell or move to wake up but felt paralyzed and voiceless. This happens to me often when I take naps and I don’t know if it’s a part of the illness or something separate entirely, but it is unsettling. I finally escaped dream world to find that Nick and Estee brought lunch into my room on a tray and sat with me while I ate. Looking back on that time now, I can’t believe what a fog it was and how bad I felt. I remember Nick trying to convince me to read the book “Freedom” by Jonathan Franzen but any time I would try to begin reading, the words would fall out of chronological order and I’d have to keep re-reading them, or I’d start to feel car sick and put it down after just a few sentences. (Luckily that symptom has mostly passed and 2012 has been filled with books!) I went to bed that night wondering what Dr. Klimas would be like. I prayed hard for two things. I prayed that we would get answers, (real answers) and I prayed that I wouldn’t find out I was crazy. By that time, I really started to question my sanity. If enough people look at you sceptically, express disbelief, or tell you you’re experiencing something psychosomatic and not actual illness, you’re going to start to question yourself, no matter how bad you feel.

To make a long story short, my prayers seemed to have been heard. For one thing, only after Dr. Klimas ran extensive tests and blood work (my initial visit at the clinic lasted seven hours) did we finally get some answers that made sense. Finally, it was explained why I always felt like I was about to faint any time I stood up or any time I had to stay standing. I had Postural Orthostatic Hypotension due to low blood volume. This diagnosis was made in under 30 minutes using a tilt-table test. (You can request this from your doctor.) The best part is, it’s totally fixable. There’s a word we love. I take atenolol in the morning and try to consume 12 ounces of fluid containing electrolytes. Atenolol prevents your heart from jumping up to 140 bpm when standing upright and controls the severe fluctuation of blood pressure. This is what I mean about answers. When these symptoms were told to one of my other doctors he told me to drink more water. She also explained how the chronic migraines are typically a result of brain inflammation (a primary condition of CFS) and how dehydration is one of the biggest triggers for migraines. (And also that prescription migraine medicine tends to dehydrate you) So especially on travel days, you should double your liquids. And you can’t just drink water. You need electrolytes. Probably the biggest diagnosis that came from that first round of tests was news that I had Lyme Disease and we would start aggressive antibiotics to get it under control. But beyond the interview, the tests, the drawing of blood, the explanations in scientific and layman’s terms, stands out one particular moment between Dr. Klimas and me. She had just finished drawing blood when I admitted to her that I had been really worried that I was going to come to the clinic and be told that I was crazy. Then we both kind of laughed and she told me that in all her time working with this illness, there has been one patient who was certifiably crazy, and that was an extreme case. “People who come here aren’t crazy, they mostly just want their lives back.” I exhaled. Finally. Validation. I had never wanted to hug a doctor so much in my life.

I’m going back to Dr. Klimas on Friday, and in the meantime am enjoying Fisher Island with family and as always, working on staying present. You know what helps me stay present? Views like this:

And golf carts like this…

And this…

And babies that pose like this…

And smile like this…

All of those things help, at least a little. I’ll report on the doctors visit next. Until then…